PBC study

[1959L]

Hi all I'm New to group although been having a peek at posts was diagnosed last year wanted to know if anyone else in the UK has been approached to take part in a study for PBC

[kimphoebe]

Welcome 1959L

I am currently doing a clinical trial don't know if that's what you ment also I have supplied DNA samples for pbc

[1959L in reply to kimphoebe]

Hi kimphoebe I recieved a letter asking if I would take part just wanted to know what it entailed

[Oidra]

Recently I took part in the "Birmingham and Newcastle Cohort Study in Primary Billiary Cirrhosis (BANC study )" ( must be old forms to still use the word Cirrhosis) at the Queen Elizabeth Hospital in Birmingham.

It involved a lot of form filling, a lot of samples, urine, faeces and blood.

I didn`t find it a problem and hopefully in the future the results might help us all.

[Hidden in reply to Oidra]

snap x

[LindyRich]

Yes I'm taking part in a study.

30 page questionnaire to fill in.

Blood samples taken.

Nothing else so far.

[Rozm2004 in reply to LindyRich]

Hi I also was approached today at appointment at Royal Free to take part in a DNA genetic research, of which I agreed so I am waiting for a pack

I just was diagnosed in July this year

Roz x

[Hidden in reply to LindyRich]

i was told its a one off x

[PCBnPBC in reply to Hidden]

i am sure there are many and will be many more research studies. Lots to try to understand, causes, issues, physical and mental, cures, transplant follow ups, so much involved, we are only scratching the surface so far. Exciting times !

[Hidden in reply to PCBnPBC]

sorry yes i meant a one off visit for that particular trial a cpl of hours out of our lives is nothing if it finds cures they were very accomadating at the QE they arranged it on one of my normal visits so i did nt have to make a seperate journey

[1959L]

Thank you for your replies LindyRich and Rozm2004 I have decided to take part just hope it can help in the future

[Hidden]

I took part in the genetic study Some years back, filled in forms of consent and sent blood test it was that easy. And one it day may help.

[Hidden]

yes i took part cpl weeks backs had pbc 8yrs im at Queen elizabeth hosp bham

[SharonM69]

I did, they just took about 20 viles of blood, they said they were testing absolutely everything, so it's beneficial to us as it's like a free medical, I was only there half an hr and they reimburse your travel expenses. If it's going to help them find out why people get pbc then we should all do it.

[Melwoods]

Yes I have irretractable itch and it’s nearly broken me over the past 2 years. I live in the north west and my consultant is in aintree

I am under Queen Elizabeth in Birmingham and see Prof Hirschfield

I am waiting to see if my bloods will get me into the Glimmer trail with if for the itch

[1959L in reply to Melwoods]

Hi Melwoods what is the Glimmer trail I have constant itch especially on my neck it really gets me down my consultant is going to try me on rimifin antibiotic next time I see her just hoping it works

[butterflyEi in reply to 1959L]

Hi 1959L

I have participated in a study at Oxford for the use of MRI to diagnose liver disease and also sent of my saliva sample for the UK PBC study into genetics. I also suffer dreadfully with the itch but my numbers were to low for me to participate in a study on the itch according to my specialist in the south. For the itch I have been prescribed : coletyramine 2 sachets a day when that did not properly reduce the itch I was given naltrexone which did not work for me then came the rifampicin which made a difference but did not rid me of the itch so then came sertraline and finally with all that medication the itch gave in! Keep trying different things we are all different and different medications will work for some and not for others.

best wishes

[jaws58]

Yes I’ve been written to but heard nothing other than a letter to say they have my info ??